7 Things No One Ever Tells You About Breast Cancer

Each October the ribbons return, the fund-raisers reboot, and newspaper headlines everywhere become overwhelmingly breast-centric. So you couldn't be blamed for thinking you know everything there is to know about breast cancer, end of story, turn the page. Except you don't—and neither do most Americans, say some of the issue's most passionate crusaders. "We've been marching and preaching early detection for decades, but the numbers haven't really changed," says Susan Love, M.D., a former breast surgeon and president of the Dr. Susan Love Research Foundation. "One in eight women is still diagnosed; 108 die every day. To change those stats, we have to move our awareness forward." Can we wage a better, smarter war on breast cancer? Absolutely. But first we have to face these startling truths.

Photo: Georgia Nerheim

We're

not trying hard enough to end breast cancer.

Millions of dollars—from 30 government agencies; hundreds of universities, drug companies, and non-profits; and thousands of grassroots walks and ribbon sales—are poured into investigating breast cancer every year. But what most Americans don't realize is this: The majority of the funding goes to science aimed at treating the disease once a woman has it rather than finding ways to keep her from getting it in the first place. Of the $631 million the National Cancer Institute (NCI) invested in breast cancer research in 2010, for example, a measly 5 percent went to prevention efforts. When you look at how funds are generally divvied up, research devoted to eradicating the disease is, as one expert put it, "a tiny, diet-sized slice of the pie."

This isn't how it was supposed to be. Back in 1971, when President Nixon signed the "war on cancer" act, the goal was eradicating cancer—that is, making the disease the polio or smallpox of its time. Over the years, though, that changed. "Women got sick, so we shifted our efforts to treating breast cancer," says Margaret I. Cuomo, M.D., a diagnostic radiologist in New York and author of A World Without Cancer.

And no one is happy with our recent progress, even in that area: While mortality rates plummeted in the 1990s, when mammograms first became widely used, they've declined less than 3 percent a year since then. "Treatment today is not much different from years ago—surgery, chemo, and radiation," says Dr. Cuomo. "Outcomes haven't drastically improved. We should be putting more dollars toward preventing breast cancer." All the experts Glamour spoke with emphatically agree.

So why on earth doesn't research for a vaccine (see here) or other preventive tool get ample support? For starters, those efforts are more complicated than simply studying the treatment of breast cancer. "This is newer science, and there is a steeper learning curve," says Dr. Cuomo. "There is research underway, but it's easier for researchers and pharmaceutical companies to focus on reformulating old drugs in new ways."

And experts say that to develop something as challenging as a cure for breast cancer, we must radically change how research is done, first off by studying women. Most work to date, they say, has been on rats and mice—not women or even women's breast cells. The problem? "Mice and rats don't get breast cancer," says Dr. Love. "We have to give it to them to study it." But for researchers, mice—who have a simpler anatomy and aren't exposed to the same environmental factors as women—"make for cleaner science," she says. "It's easiest for publishing papers. And researchers get funding and tenure by publishing papers, not looking for a cure." (Dr. Love hopes to change that: This month she launches the Health of Women study, the first "crowdsourced" breast cancer research initiative designed to look for causes of the disease; women can sign up online to take the study's regular surveys.)

Also key: getting scientists to pool their findings. "Traditionally, breast cancer research has been about a group of guys in a lab looking at a small aspect of the disease," says Fran Visco, president of the National Breast Cancer Coalition (NBCC). (That's because collaborations, our experts charge, are less likely to make money for individual institutions.) But solutions for big public health problems have historically come from an "all hands on deck" approach; the discovery of the HPV vaccine Gardasil, for instance, was the result of work by a team of scientists from three countries and three specialties who pooled their expertise.

Advocates are calling for that collaborative spirit now, and the NBCC, for one, has created the Artemis Project with the goal of wiping out breast cancer by 2020. "If we can be successful in eradicating polio and smallpox, why can't we be successful in ending breast cancer?" asks Dr. Cuomo. "At some point you have to say, Can't we do better?' And the answer is yes."

If you've been confused about the conflicting headlines on breast self-exams (BSEs), here's the bottom line: Forget the step-by-step monthly ritual of feeling yourself up—just knowing your breasts well is generally enough. "Doing formal self-exams is pointless!" says Dr. Love. In one telling study, researchers trained one group of women to do regular BSEs; a second group wasn't given any advice on how or whether to do them. At the end of 10 years, both groups had the same number of breast cancers, and those who didn't do BSEs found theirs just as often as those who did, usually through everyday activities like showering or rolling over in bed and feeling a lump. Other studies have found similar results. "The message," says Dr. Love, "is that you don't need to do formal exams, but you do need to know what your breasts normally look and feel like so you'll notice if something changes." Watch out especially for nipple discharge and changes in size, shape, and even skin texture or color. (Inflammatory breast cancer, for instance, may prompt skin discolorations or orange-peel-like dimpling of breast skin.) In Glamour's poll of 30 women, all but three correctly identified their breasts—but those who didn't were floored. "I live with these every day, so I can't believe I chose wrong, especially because I had a breast cancer scare three years ago," says Jacinda Carlisle, 38, of New York City. "I've been through so many exams and biopsies that you'd think I'd know myself better. I'm so fortunate that I'm healthy, but this really made me want to be more vigilant about watching for any changes and taking charge of my own health."

It also helps to pay attention to your breasts more diligently during key times when cancer could develop. For young women, that can be during and right after pregnancy. "Even though having a baby lowers your lifetime risk of the disease," says Marc Hurlbert, Ph.D., executive director of the Avon Foundation Breast Cancer Crusade, "your odds actually go up during pregnancy and until around the time your kid goes to kindergarten. During that time, the physiology of the breast changes—the hormones, the structure—so any abnormal cells can be stimulated. If you notice anything new then, tell your doctor about it."

Shocking but true: Having the money to pay for good health care can make all the difference in whether breast cancer will kill you. It's an economic disparity that researchers are outraged by, and minorities are often the hardest hit. "Breast cancer rates have remained the same among white and black women since we started keeping records in the 1950s," says Hurlbert. "But in the 1990s, when we had some breakthroughs in early detection and treatment options, the mortality rate for white women dropped by about half. For African American women, however, the death rate stayed the same—and it hasn't improved since." Some experts suspected genetic differences at first, "but when you look at the data over time, it comes down to a matter of higher socioeconomic status versus lower, or insured versus uninsured," Hurlbert says.

And sadly, that disparity appears to be widening. In fact, African American women are 40 percent more likely to die from the disease than white women, despite the fact that they get breast cancer less often—and it's estimated that 90 percent of that discrepancy is because of their often shoddier health care. Alarmingly, a recent study found that 1,722 black women die "needlessly" each year as a result.

"It is a moral obscenity that we allow this disparity to continue to exist," says Steven Whitman, Ph.D., director of Sinai Urban Health Institute in Chicago, who conducted the study. "These are the lives of mothers and sisters and daughters we're talking about. How can we allow only rich women to have the advantages? How can we say to a poor woman who has breast cancer, I'm not going to help you; you just have to have their go and die'? The human cost is extraordinary."

If you or anyone you know is struggling to get care, go to cdc.gov/cancer/nbccedp to find free or low-cost screenings in all 50 states. They're typically just as high-quality as the ones insured women get, notes Hurlbert; indeed, sometimes those screenings are done at the same hospitals by the very same doctors.

Breast cancer has been linked to a head-swimming number of possible causes, from eating too much soy to wearing underwire bras. "Every minor study gets so much play," says Dr. Love, "that women start to believe all these things can raise or lower their risk. But most aren't backed by solid science." These four are.

Photo: iStockphotoExcercise can reduce your risk by 25 to 30 percent. "About five hours of brisk walking a week is ideal," says Paul Goss, M.D., a professor at Harvard Medical School. "More doesn't give you an added benefit, so you don't have to be a marathon runner." Why does working out help? Experts believe it may reduce stress and inflammation, and boost the way your immune system responds to cancer cells. Maintaining a healthy weight lowers your odds by up to 250 percent. "Fat cells pick up and store estrogen," explains Avon's Hurlbert, "and since estrogen drives most breast cancers, the fewer fat cells you have, the lower your risk of the disease." If you're carrying extra pounds, even minor weight loss could help. In a recent study, women who shed just 5 percent of their body weight cut their risk 25 to 50 percent. (And it's not necessarily about whether you're eating enough blueberries or spinach either—the impact of specific foods has not yet been definitively linked to reduced risk.) Limiting how much you drink drops your risk by 24 to 50 percent. "It's pretty conclusive that drinking alcohol does increase your odds of getting breast cancer," says Hurlbert. The message: "You shouldn't regularly have more than one drink a day. If you have two or three drinks one night, take a couple days off before your next cocktail." Giving birth before your midthirties and breast-feeding for at least six months afterward lower your risk by as much as 50 percent. If kids aren't in the cards for you by that age, though, don't panic. Focusing on the three other things on this list will still dramatically improve your chances of staying cancer-free.

This startling possibility has scientists practically jumping up and down with excitement at their microscopes. "We should know within the year whether or not breast cancer—or at least certain types of breast cancer—may be caused by one or more viruses," says Hurlbert. "If that's the case, we'll be able to throw our efforts into developing a vaccine to prevent it, as researchers did with HPV and cervical cancer." Indeed, HPV is one of five viruses that the folks in lab coats are looking at closely, he adds—and if HPV is linked with certain forms of breast cancer, we could already have a vaccine in our hands that might protect millions of women and girls. In fact, those who have already been immunized may even have some level of protection. Says Hurlbert: "This is the most promising research that's happening right now."

Think you'd fall apart if you were diagnosed? Meet swimwear designer and proud survivor Malia Mills—who learned from breast cancer just how tough she really was.

I spent years feeling self-conscious in bathing suits. And my frustration led me to the philosophy I run my company by: "Love thy differences." I really want to encourage women to love their bodies as they are.

But I never truly appreciated my own body until I got diagnosed with breast cancer. I've never talked about this in the media before; I respect that every woman's experience with breast cancer is so different—mine doesn't capture it by any means. And now that I am talking, I'm scared. Break-out-in-a-rash scared. But I'm also ready. I want women to recognize that while breast cancer is a really f--king huge deal, you do have it in you to get through it.

My mom is a breast cancer survivor, so I always had a "What if it happens to me?" voice in the back of my mind. Then, in 2005, when I was 38, I felt a rock-hard lump in my right breast. Fast-forward through appointments with specialists, a mammogram, and a grueling needle extraction, and I had my diagnosis: stage-two breast cancer, which had spread to my lymph nodes. What followed—the second and third and fourth opinions, two lumpectomies, a single mastectomy, reconstructive surgery, chemo, and five years of treatment after that—was surreal but made me stronger. I want to share with you the moments that stand out most to me:

When I woke up in the hospital after my mastectomy. That morning, a woman armed with a stack of catalogs for wigs, turbans, and bras came into my room: "Are you ready to take off your bandages?" she asked dramatically. I'd never thought about seeing myself postsurgery as some Big Unveiling, but she helped me unwrap the gauze, and I looked down. Where my right breast had been, my chest was flat. And then I saw the stitches. They weren't horrible or scary; they were fascinating. It was as if the doctor had sewn an invisible hem. There was just a delicate pink line. And to me, that line was beautiful. It seems kind of barbaric to cut off a breast, but in a way it's also such a miraculous procedure. In that moment I felt so grateful for the science that kept me alive—and maybe a little badass.

When I got a mohawk. I'd had long hair, but before I started chemo I was like, screw it: I'm going to do something I'd never ordinarily do. So I went to my hair guy and said, "I want the craziest mohawk you can cut." It was one of the most liberating things I've ever done. With this wild hair and no breast, I looked radically different—but I still somehow felt that life was good.

When my boyfriend saw me for the first time after chemo. Christian and I were going through that "Where are we going?" moment that so many couples hit. At this point, two months after my surgery, he'd been away for work for a few weeks. That day I don't think I could've looked worse. I had patchy hair, I was kind of green, and I still had just my one breast. (I waited six months to get my reconstruction.) I was apartment-sitting for a friend at the time, and I remember the elevator door opened and he walked into the room, and it was like something straight out of a movie: He looked at me, and in an instant it was clear—I looked terrible, and he loved me. I felt the same sense of liberation as with the mohawk, like everything was going to be OK. Seven years later, we're still going strong.

When I showered at the gym. I'd gotten my breast reconstructed, complete with a new nipple made out of skin from my upper thigh. I'd never had an issue with undressing in the locker room, but suddenly I was hyperaware that my chest might freak people out—it was like a big neon sign pointing at me with the words Cancer Alert! I shimmied into my sports bra quickly, awkwardly, thinking, Damn, this is bizarre. In that turned-away moment, my head and my heart were at odds. I worried that my wonky chest could make people feel awkward. Sometimes I still do—today my right side, the new model, is perky, while my left side, the original vintage model, has gravity working against it. But I remind myself it's not such an anomaly: I don't know anyone who doesn't know someone who's had breast cancer.

When I wake up and my jeans don't fit right. There are times when I still have those annoying body-image moments we all have. You can't skip through a field of flowers every day. You just can't. But I've come to realize that if you can stop the spinning in your brain of My jeans are tight, I can't believe I ate that—if you can change your clothes, put some mascara on, get out of the house, and move on, life will be much more fun.

The truth is we women are just way too hard on ourselves. We need to remember there's total beauty in who we are, and it's not about what we look like. Cancer made me realize: You can cut off all your hair, and people will still think you're great; you can look your worst after chemo, and people will still love you. So what the f--k have I been worrying about all my life? We spend all this time looking in on our lives from the outside, but we gotta get in it, and live it. Because it's a day-by-day gig.—As told to Jessica Press

"If your doctor's not up on the latest advances, he could be giving you outdated advice," says Lillie Shockney, R.N., a professor at Johns Hopkins School of Medicine. "I've seen it happen to too many young women." Never take these phrases at face value.

Lie #1: "We have to operate right away."

Many doctors rush patients into surgery, telling them there's no time to weigh options. "It's intimidating," says Shockney, a two-time breast cancer survivor herself. "They make people think they're going to drop dead by Monday." The reality? Most breast cancers are slower-growing than women realize, and top oncologists agree that once a woman has her diagnosis, she can usually safely spend up to four weeks deciding what treatment to pursue. Says Shockney: "Nothing's worse than having surgery, then realizing you could have done something else."

Lie #2: "Your best option is a mastectomy."

For some patients—like those with aggressive cases or a family history, or who test positive for a breast cancer gene—it may be. But for those who don't fit these criteria, "there is no evidence that a mastectomy will lead to a better survival outcome," says Patricia Ganz, M.D., a professor at UCLA's Jonsson Comprehensive Cancer Center. "A lumpectomy with radiation is often equally as good." Unfortunately, there's been a surge of mastectomies in younger women. That's due to two factors, experts believe. One, doctors often mistakenly assume that cancers in young women are aggressive and apt to recur. Two, MRIs are being used more often to detect breast cancer, and they have a high rate of false positives. "Doctors may say to a young woman, Your MRI shows suspicious areas in addition to what we already biopsied. We're not sure if they're cancerous, but if you want to play it safe, you're better off removing the whole breast,'" says Dr. Ganz. The lesson? Always request that second opinion.

Lie #3: "You can worry about reconstruction later."

It can be a good idea to put off reconstruction if you know you'll need radiation (which may damage an implant) or if you need time to decide what kind of implant, if any, you'd like. But many doctors discourage patients from having a mastectomy and reconstruction together solely because it's a hassle to coordinate both surgeons' schedules, says Julie Gralow, M.D., director of breast medical oncology at Seattle Cancer Care Alliance. Yet when you delay reconstruction, "you never get as good a result because you've taken off all the skin, which could be used right then and there in the reconstruction," says Jill Dietz, M.D., a breast surgeon at the Cleveland Clinic. So if you do know what you want, insist on having the surgeries simultaneously.

Lie #4: "You'll be infertile."

Some types of chemo do damage your ovaries, but Dr. Ganz's research has found that certain regimens are less likely to have this effect. Still, "not all doctors have heard of these," she says, so they push older, less fertility-friendly chemo plans. If you're concerned, see a breast cancer fertility specialist.

But remember this truth:

"The more you learn, the more confident you'll be in your decisions," says Gwen Stritter, M.D., a breast cancer patient advocate in Portola Valley, California. "The old adage Knowledge is power' is especially true for women and breast cancer."